6 1/2 years

Hello!

Another Christmas has come and gone, and as most people who know me are fully aware…Christmas is my favorite holiday.  We had our best season yet!

I can’t believe that I am now 6 1/2 years post double lung transplant!  Never did I imagine this.  I always found myself saying that I want to just live long enough “for the boys to understand and process things”.  Then, I always say “until the next baseball season”, or “until junior high”, or “until next Christmas”, etc.  I am beginning to realize that I will never feel fully ready for that day to come.  I found myself the other day daydreaming about who my boys would choose to marry and what it would be like to be there.  I have written letters to their future wives already knowing that chances are, I won’t be here for that.  But I want to!!!!  I want to see those lucky ladies.  I want to be a part of those special days.  But…who knows.  I don’t know what God has in store for me, but I will just keep pecking away and see where He takes me.  I don’t even think about life expectancies as much as I used to anymore.

In June of last year, the doctors told me that I have a type of rejection going on called Antibody Mediated Rejection (AMR).  This is where my B cells produce antibodies that attack the donor lungs.  The plan was to do 6 months of intravenously administered medications in Iowa City to stop antibody production and then retest in December.  Unfortunately,  upon retesting in December we realized that it didn’t work.  But my numbers were not worst than when I started treatments.  They just stayed the same.  So, now I am continuing my treatments in Iowa City until further notice, possibly forever.

The other issue I am dealing with right now is my auto-immune disease.  This one is rough at times.  Unfortunately, I never know when my flare ups will come on or how long they will last.   These flare ups of my auto-immune disease sometimes happen a few times a month, sometimes every other month.  No rhyme or reason there at all.   Christmas Eve night I had one of my worst ones ever.  I had fevers, chills, excruciating pain shooting all over my side and chest, and there was nothing I could do to make it go away.  It lasted about a week and a half.  There are no treatments for this.  It just is what it is.  To make matters worst there, when I am in that type of pain, I always find myself having anxiety attacks, feeling like I am going to die and like I am in the hospital again with no hope to survive.  Panic attacks are terrifying and feel so real.  I have a new understanding and compassion for people who deal with those things on a regular basis.  I try talking myself down, and not much makes them go away besides just praying and waiting for them to end.

Outside of those things is just trying to stay away from sick people!  I have been trying really hard not to go in public often.  Staying away from public situations.  My immune system is very compromised because of all of my immunosuppressant medications.  With Influenza A and B out there and all of the other viruses, I stay home as much as I can and try to avoid all of it!  I wear a mask when I do go out and don’t touch anything!  🙂  I have noticed that people avoid me like the plague.  They think I am the sick one!  Haha.

I will continue to try to stay healthy and will count my blessings every day.  I never get tired of this life and still appreciate every single day as it comes.  Jay is still the best husband in the world.  He is better than any man I have ever seen in any chick flick I have ever watched!  🙂  And my boys are now 9 and 12, and they are excelling in school and sports and making me a very proud mom each day.  I still live every day with a thankfulness in my heart that I don’t believe I ever would have had if I hadn’t gone through all that I have.  God has been so good to me.

 

 

11 thoughts on “6 1/2 years

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  1. You are truly an inspiration Melanie!!! May god continue to bless you. I keep you in my daily prayers. God bless you.

  2. May our Lord continue to bless you, Jason and your boys and give you strength!

    Pat Warneke. . . Proud to say I knew your husband when he was a little boy. . .and he was just as much a blessing then as he is now! His folks are the best!

  3. God Bless Melanie. ♡♡♡ I have a feeling you’re going to be around for a long time. Serena told me what you’ve been dealing with. I know a,woman on her 2nd lung transplant . I think of you often and pray for you 💘

  4. May God Bless you with a very long life Melanie. You are in my prayers and I hope all of your dreams with and for your family will be realized and then some. You are an inspiration to us all. Thanks for sharing your story.

  5. Take care of yourself Melanie. You and your family are very blessed, and you have a lot of cheerleaders praying for you. Just take one baby step at a time.
    I was so glad to read your update and know you are a fighter. Hug your boys often and much love and prayers!!!

  6. Hey, I don’t know how often you check this, but I live in Davenport, IA and recently was diagnosed with LAM. I have had 2 pneumothoraxes and hope to be on medication soon. I guess I am right on the boarder. Anyway it’s been helpful to read your blog and get an idea of what may be coming my way. Thank you for writing this! I hope everything is going well with the lung transplant and may God continue to bless you with life.

    1. Hi Alicia! Wow, you are so close to me. I live in Milan! I’m really glad you found my blog. This is such a rare disease, it’s crazy to find someone so close to me. Are you going to try the sirolimus? I would love to grab lunch with you sometime to chat about things. Only if you want of course. I would be happy to answer any and all questions for you! God bless you!

      1. That would be great! I’m not on sirolimus right now. I’m actually too well to start it. I would like be to get together. You can call me at: 563-447-0088

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